January 20, 2016

When it is who we are

There’s a group of assertions that have become common, among a fraction of parents who, superficially at least, believe themselves to be taking an accepting approach towards their child’s autism or disability.

They’re not necessarily looking for a cure. They’re not subjecting their kids to 40 hours per week of repressive therapy. They’re not bemoaning their grief for the non-autistic child they lost or the tragedy that their family’s life has become.

They’re just really insistent that autism not be allowed to be meaningful to who their child is.

“But it’s not who he is. It’s just something he happens to have.”

“It’s just part of who he is; it’s not all of who he is.”

“It’s part of her but it doesn’t define her.”

“Autism isn’t him, it’s something that happened to him.”

Lately it comes to dominate discussions that aren’t even about person-first vs. identity-first language choices, so fearful is the notion that autism might have any sway in who a child is.

And in some ways, I am more frustrated with this variety of denialism than with the way more openly hateful outlooks of curebie parents. In some ways, I think the parents who far more openly hate their children being autistic are being more honest, as deeply unfortunate as I find their position, than the ones hiding fear and disgust behind “There’s nothing wrong with my child as a person; this is only a thing that they have. It’s not really part of them.”

“It’s not who they are.”

Because that would be the worst thing.

What if it is, though?

What if they can’t meet your demands that they cut themselves off from that much of their psyches? What if they can’t or won’t hack themselves up that way?

As long as it’s not actually who you are, isn’t actually de-stigmatizing.

Just as long as you can let us believe that this isn’t really part of you is not actually acceptance.

Just as long as it doesn’t have real consequences for how you have to live your life.
Just as long as it doesn’t affect you in any significant, unavoidable way.
Just as long as it doesn’t mean anything to you, let alone anything good.

Just as long as it’s fundamentally separate from you.

If it kind of sounds like “Love the sinner, hate the sin,” that’s because it kind of feels like it, too.

Being forced to hold something true and essential about you at arm’s length for years and years, being told that you’re not really the person you are, that the real you, the correct you, is someone who doesn’t move through the world the way that you do…that you are not really like this, it’s just something that you have….

(Let me tell you something about trying to do this. The horrible part isn’t that it can’t work; it’s that it can, for some amount of time, anyway. The result isn’t a person who isn’t autistic, it’s a person who feels like a stranger or a ghost in their own life.)

As long as your whole experience of the world—the way language and emotion, music and light, passion and movement, space and time work—isn’t really innately woven into who you are…

It’s a variant, not a repudiation, of who you are is not acceptable. You’re only a person if you aren’t like this.

“But it’s not who he is.”

How would you know? (How good were your parents at reading your mind, at knowing how you truly and deeply felt about yourself as a child? How right were your parents about who you’d grow up to be? How psychic about these things are parents, generally speaking?) Would she tell you? Would she have the words to? What expectation have you given her about how you’ll react if she comes to you and says “Yes, it really is?” Have you exposed him to the diversity of first-person viewpoints that would allow him to know one way or the other? Is he allowed access to autistic people who describe their own experiences in various ways? Different autistic people do have different conceptions of what autism is to them. Most say that it is part of who we are, but some don’t; the point is that we all, individually, have the right to make those judgments about our experiences and internal lives and descriptive preferences. Do your children not have the same right to conceive of who they are or aren’t for themselves?

YOU WANT TO TRY BEING A KID OF UNDIAGNOSED AUTISTIC PARENTS AND FIVE SIBLINGS WITH ALL QUITE SEVERE AUTISMS CONVINCED OF THE “EVERYBDY IS EQUAL AND THE SAME” INSANE THINKING TO THE NTH, WHERE IN THEIR WORLD THEY ARE “NORMAL”. AND THEY THINK I NEED MEDICATING IN ORDER TO “CALM ME DOWN SOMEHOW”.
WHEN I ONLY REALLY GET ANGRY WITH THEIR TOTAL INDIFFERENCE TO ANYONES EMOTIONAL NEEDS.
THEY HAVE BANNED THE WORD AUTISM , ALL REFERENCE TO IT…
BNKERS.

It definitely sounds like you haven’t had an easy time being understood by your family, and I am sorry for that. As it happens, I grew up as the only autistic person (undiagnosed) in my immediate family, and that was rough.

I’m not sure what part of what I wrote here you’re responding to, though, and I am going to have to ask you to not yell (that’s what writing in all-caps does) in comments here. It’s very difficult for me and for a lot of people to read. Thanks.

Thank you for a great post. I too grew up undiagnosed and it was only December 2014 at age 53 that I finally had answers. The struggle to not be who I was, even not knowing, finally led to my equivalent of a collapse in 2008 and I was hospitalized for the better part of a month. They diagnosed it as Depression and Anxiety and PTSD. They never saw or looked for Autism. It was me who knew there was something else and kept looking and it’s now that I can see that all of those years of denial of who I was, who I am is what led to my collapse. Trying to hold it all together had finally run it’s course. Parents have to know that this is who we are.

Thank you for this.
Denial.
As a kid, I was assessed, initially for intellectual giftedness, and then… there was silence.
Three decades’ worth of silence.
When I finally connected my own dots, and then came out as autistic to my family, I was met with bullying. .
Denial.
Denial of traits becomes denial of the person, and brokenness, and helplessness of sorts. It makes for internalized ableism of a strange sort, because the weight and difficulty of life is not shared. Shame multiplies: not allowed to need help, not allowed to understand, not allowed to be imperfect, and especially, not allowed to be beautiful in your own way.
Let’s talk about disability, as a real, neutral thing, and talk about needing help, and being allowed to ask, and being allowed to learn about yourself without shame.

[…] Everywhere I had turned–my private social circles, parenting groups, professional websites, books, media–autism was constantly referred to as a problem to be solved, obstacles to be worked around. It was always a negative, always something to be discussed delicately similar to the way you would talk about plantar warts or a recurring yeast infection. Always something that’s “part of a person, not something that defines” them. (Because what if it did?) […]